Please post your results

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james1947

Please post your results regarding Xiaflex treatment.
FORUM XIAFLEX RESULTS - Peyronies Society Forums
From maybe over 100 people that had the Xiaflex treatment, we have only 7 members that posted they results.
Somehow sad that people don't want to spend 2 minutes to help others :(

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

james1947

Very disappointing.  :(
Many members have made/making Xiaflex treatment, only 10 people posted until now on:
FORUM XIAFLEX RESULTS - Peyronies Society Forums
Most/all also no any updates.
Why is so easy to take and so difficult to give, to help others?  :(
It cost no money to post your results, it takes less than 5 minutes!!!


James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

james1947

Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

james1947

ReaJam & xf

Thank you for posting your results.
It will take you just 2 more minutes to arrange your post in the format that everyone can easy understand.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

badjojo1961

I have had only 2 xiaflex injections thus far. I started with a 30 degree bend right below the glans or head of my penis. I have noticed a reduction in the curve-probably its a 23 degree bend now. I have also been using the Phallosan stretching device pretty religiously for about a month. I have regained a little more that 1/4 inch back. My initial erect length before peyronies was so close to 8" i will say 8. I am barely over 6" now. I had never measured girth before peyronies but it is 6" now and I hope the Phallosan device can increase that.
It still works and i can perform without pain!! I feel i am one of the lucky ones so far. I have read so many other posts and my prayers are with each of you.
I have a lot of information to share. I hope to continue to get good results

waitingforxiaflex

Moderated - Please don't make duplicate posts.

healthadvocate

I had great results-life changing! Went from 80 degrees straight up to 40 left and 40 up (after first round).
Just started second round, but may stop per Dr. agreement after second round because of good results. Another great benefit was I gained and inch and some width. This was size I lost because of the disease. Probably as thick as I was before and gained half of length lost back. Note: I have always had a 20 or 30 degree left my whole life.

healthadvocate

Have now finished the second round and not sure if I will go further. It seems as if all my improvement was in first round and it was fantastic. As I indicated, 80 degrees upward change to 40 upward and 40 sideways. We are now having sex front to front again and this is so great! The angle change and added length makes all the difference. I was always about 25 degrees left and 10 up. I lost 1 to 2 inches with the disease and have gained back at least 1. I am still modeling and will discuss further with doctor in July to see if additional shots are warranted. I will report further then. I would recommend Xiaflex to anyone with an upward curve and or length loss that is chronic and not congenital.

Lucketts



Again..would you be kind enough to share the name of your doctor?  Thanks.

healthadvocate

Dr. Novotny with Kaiser Roseville

ho2tcm

Just finished my first round 2 weeks ago have not noticed and straighting as of this time.

lukewill

Quote from: ho2tcm on August 25, 2016, 03:55:48 PM
Just finished my first round 2 weeks ago have not noticed and straighting as of this time.

Have you been doing the exercises and vaccum pump?

ho2tcm

Modeling yes after the swelling went down!

lukewill

Quote deleted by moderator Read the forum rules!!!

May I ask how long it took for you to see results after the first round, and did this include modelling ?
Best
L

Richard Hertz

I guess my lengthy post was moved.

Start: sharp 70˚ upward bend 2/3 of the way up from the base. Size and girth restricted by collagen. It didn't hurt or cause erectile issues, but it made sex very difficult. Doctor waited a year to see whether it would resolve on its own.

End: after four treatments (see below), gentle curve that nobody would think twice about, girth and length are back, the whole thing is essentially over and done with (with the caveat that collagen continues to form, so I may need more in the future).

Results after each treatment are pretty apparent as soon as swelling goes down after a few days, and each one improved it a little. Treatment = injections, wait three days, re-injections, wait three days, "modeling" (which is a silly term for "doctor squeezes injected collagen hard between thumbs to break it up"). I followed instructions to stretch 3X/day for a few weeks.

Your other similar post was deleted by moderator. Please read the forum rules!!!
If you have any intention to help other forum members please post on the link bellow according to the first post, not just copy/past your post here
FORUM XIAFLEX RESULTS (Results only, not a discussion board) - Peyronies Society Forums

lukewill

Quote from: james1947 on January 12, 2017, 06:27:22 AM
Rude is not to obey the forum rules!!!
Have forum members that invest a lot of time and money to make this forum as it is for the benefit of all the members and guests!
Any society have rules and the members suppose to obey them.

James

You deleted my post too. I am confused at to what rules I broke. I have been an active and I would like to think courteous and helpful participant in this forum. I would hope that your abrasiveness does not put people off from using this service, as we should all be here to help each other. If you are resentful of having to pay for the upkeep of this website, all you need to do is say. I would have been more than happy to contribute or pay all running costs. What I don't appreciate is the negative tone towards people on here who are clearly not purposefully trying to cause any disruption or problems.

lukewill

lukewill

Sorry to direct you again to the forum rules :)
Please read the forum rules regarding quotes

James, I understand that you are not a native english speaker and maybe meaning is lost in translation, but your patronising tone is unnecessary. I wish you all the best

Rotis

I have posted my detailed story two times before but for some reason it seems to have been deleted. I won't write the full details again but here is the short story. Total success.

When peyronies hit me my little friend went from 15 to 11 cm with a substantial bend about 80 degrees. I have been very stubborn and as in the start i did not see much progress. Later i have learned that i probably had a little progress every time but not enough to see the difference between the shots. I hav taken 10 injections by now and gained 3 cm back from the 4 i lost. I still have some bend but much less. the plague is almost gone, My life is back and I am very happy. The side effect with swelling and pain was substantial but bearable. It has been very expensive but worth every cent. Its a shame that every shot costs 1000 euro. If you need one in you finger to solve the problem then 1000 is ok but for Peyronies it should be possible to get a package of injections for half the price or less.  

james1947

Willywonka

Thank you for the detailed post on the Xiaflex forum results :)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Sta

Would be also possible tp post photos before/after?  
Born 1985, Peyronie's since 2011/12. Lost approximately 3 cm of length and seriously bottlenecked.

james1947

Yes, the board bellow was made for this purpose:
Board name: Photos of Xiaflex therapy - Warning, Explicit photos
https://www.peyroniesforum.net/index.php/board,53.0.html

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Kertmccarty

Well I've had my first cycle of Xiaflex I'm very sore in my crouch area and my penis went from light bruising to a bunch I'm hoping it will go away in a couple of days or I'll tell my Dr but I and my wife noticed a great improvement in my curvature I started with 67d upward and now I'm probably in the mid or lower 50 but Dr didn't measure just scheduled me for my second cycle I have  pain when I bend it the opposite way when erect and I'm scared to do to much and damage myself more I'm scared just want this to be over I'll keep y'all updated  

james1947

Kertmccarty

Do not try to straiten the bend by force. You are risking heaving additional scars!!!

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

h_s_stanley

Had my second set of two injections.  This time, the two injections were only two days apart.  The second injection hurt more than any previous ones had.  Doctor commented on lessening of scar tissue.  There is definitely an improvement in the amount of curvature but still a lot.  I would guess I'm at maybe 60 - 65 degrees now compared to at least 75 - 80 degrees when I started.  So improvement half way through treatments.  We'll just have to see whether it is enough improvement when all four sets of injections are done.

LeCarre

It's six weeks after my first round of Xiaflex treatments. I'm happy to report that I now have improved sensation during sex. I seem to have more girth, though less length than I had years before Peyronie's struck. I still have a bit of a bend toward the end, which still causes some problems during sex. I think the tunica(?) doesn't reach the end of my penis, so the head will sometimes "flip"backwards in the direction of the curve. It's not painful, but it is disconcerting. Prior to Xiaflex, the underside of my penis seem to accumulate blood flow, and not reach the head.  

I still have a big chunk of plaque toward the end of my penis, which is where I have the bend. The plaque is a bump, about the size of a small pea, and seems to be on top of a ridge of plaque the size of a piece of grated carrot. (Sorry for the food metaphors, but that's what comes to mind).

I'm scheduled for Round 2 of Xiaflex on September 11, and I hope to get some progress with the existing plaque.  

QuackAttack

I am 3 weeks post cycle 5 and I am at about 25 degrees after starting out at 50 degrees. I go back for cycle 6 in two weeks.

scottslcut

just finished my 2nd round of shots and into modeling.  Not near as much bruising and swelling this time. I wish more would post photos so we could better gage results to others. Is there a place I haven't found?  Most pics i'v seen are disaster photos...

RedWilly

Will xiaflex be effective if my scar tissue is not calcified yet?

QuackAttack

Red,

You are way better off if your plaque isn't calcified according to my URO, which may be one of the reasons Xiaflex treatment is starting sooner.

RedWilly

Wow, really?

I scheduled an appointment. Thanks.

lessor


How many degrees is your  curve?

RedWilly

My curve is slight... 15 - 20 degrees most likely.

What concerns me is the girth loss. I lost about 1/4 an inch and now have ED... which doesn't seem like much of a loss (expect for the ED) but the last 2 women I've been with have commented on me having a "thin" penis and it's really messed with my head and made sex more of a chore.

It's also very visible where it thins. I understand the situation is most likely mild to moderate in terms of size loss and curvature. I would like to get back my strong erections though and I think getting rid of the scar tissue will help with that and help ease the pain that comes with sex.

I scheduled an appointment with Kaiser Los Angeles (Sunset Blvd.) - via recommendation from USC Urology.  

pdpatient2017

About a week ago , I had my first set of injection. Back to back days. Before injection I had 55 degree curvature. start modeling 3 days after second injection. After second injection, I had lots of swelling and dr. wrapped it up with bandage. most of the swelling is gone now.
Injection was painful but short and can be tolerated.
My urologist is Dr. Dan French from Dallas,TX. Xiaflex has a list of injector and if they have administered more than 20 injection , they are rated higher. Dr . French has administered lot more than 20 injections . I will post result of any improvement in a week or so

betterbend

Wow! back to back days...  Glad mine are a week apart, I was bruised up after my second one last week.  
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

pdpatient2017

I was diagonized with peyronnies on April , 2017. I was told to wait about a year before any treatment . I just had my first two shot of xiaflex. It was administered back to back days. after every injection my pennies was wrapped or bandaged and it help with swelling. Shot was painful , but sort and can be managed. There were more swelling after second shot all the way up over the abdomen . swelling and pain reduce after 3 days . And I started modeling after 4 days of 2nd injection as I was instructed by my urologist.
I was told to wait 2 weeks from sex. I have not have opportunity to measure erect pennies yet . My curvature was 55 degree before treatment. My urologist is Dr. Dan French from Dallas,TX. Really good one.

pdpatient2017

sorry for repeated post. yes betterbend, I was worried but they told me that generally 1-3 days . If no serious issue they do back to back days.

pdpatient2017

It is 2 weeks since my second injection. My uro told me that I can have sex after 2 weeks. I would like to know whether anybody waited longer or started on 2 weeks mark

TonySa

3 1/2 weeks per my doc to play it safe...he wants NO fractures.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

AussieDude

Posted on another topic with a more detailed version (combination treatments I think), but I've had 1 round and so far so good. I reckon my dorsal curve has reduced by half. Check out my original post for details.

TonySa

PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

SBval

Gentlemen. Had first set of Xiaflex injections June '18 followed by 2-3 hours per day of traction using X-4 Labs device plus modeling as recommended by drug mfg. Starting erectile distortion of 45 degrees upward. While straightening progress difficult to perceive so far, my experience in intercourse has improved sufficiently that I'm conflicted about whether to proceed with further injections. I want to ask the forum if anyone has experienced new distortion or bend following injections because I have noticed a slight erectile bend sideways away from the side where the injections were sited. Overall I'm optimistic and wish the best for everyone

TonySa

Maybe reduction in the plaque treated then allows other plaque to influence the penis in another direction?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

GBinNC

I posted this on another thread re:results so delete if not appropriate here. But many ask about the physician and their techniques.
Name: GBinNC
Date: July 2018
Degree of Curvature: 45 degrees to the left
Result: Excellent but not perfect
Number Of Shots: 8 shots (4 rounds)
Doctor: Aaron Lentz, MD (Duke University)
Modeling: Self
Summary: My curvature being to the left and not dorsal made intercourse painful for me and wife. Dr Lentz is an expert in this field and luckily I live in North Carolina close enough to Duke to see him. His method is putting very precise injections directly into the plaques and he moves the needle around thru multiple areas of the plaque during each injection. I'm not gonna lie, that method probably increases the pain dramatically b/c it is essentially multiple injections each visit BUT I think that is also why I had a very good result. I can tell the plaque is now more malleable and not nearly as rigid as original. I had some bruising but not much pain except for during the injections. I had a couple of series where I had one shot on Friday then got the second injection of the series on Monday, that three day "break" made the 2nd injection much less painful than the normal series where got injection on Monday and 2nd injection the next day on Tuesday. Those were painful.  My curvature is probably less than 10 degrees and now is more dorsal. Sex is not painful for me or the wife. Biggest downside is I went from being a thick 7" penis to a thicker 5" penis with some hourglassing right below the head. I did not think it would bother me but it does.  Wife likes the more dorsal curve as the leftward curve was virtually impossible.  I finished my injections 3 months ago and I have my 90 day followup in 2 weeks. I will ask about length issue but I fear from reading other posts that those 2" are history and I should just be happy I'm able to have sex. I highly recommend Dr Lentz and the Duke Urology program.  

Jfriction

I've had 2 rounds, 4 shots, with zero improvement. Still at 30 degrees. I wear the esl40 for 5 plus hours a day...
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TonySa

How many weeks since the second round?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

Quote from: Jfriction on September 03, 2018, 05:44:41 PM
I've had 2 rounds, 4 shots, with zero improvement. Still at 30 degrees. I wear the esl40 for 5 plus hours a day...

Hey... that was my story with Xiaflex.  My last injection (round 2 #4) was in March.  I was thinking about finishing up the cycles now, but am leaning against since things seem to be ok.  But Xiaflex didnt do much at all, I think the traction was helpful ..
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

webfoot35

I went through 7 cycles (14 injections) from the Fall of 2017 through the Spring of 2018, with zero improvement. I started at a 50 degree curvature and I'm still at 50 degrees. I was disappointed to say the least. I'm a 62-year old who has had peyronie's for about 4 years.  

TonySa

I'd consider two more rounds as that's the protocol, otherwise you won't know if you may have had some benefit eventually.  Also, is your doc experienced in doing these injections-if not that could be a factor.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

In my case, my doctor said that in his experience if he doesnt see a response after the first four injections, the likelihood of a response in the next 4 is low.  He has had men improve in the second set, but that is the exception.  He gave me the choice to continue, but I am not so sure I want to go through more injections right now.  He is a very experienced physician, sees 400+ Peyronies cases a year, but he is also very rigid in his treatment approach.  
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Chiefy

I had 3 series, 6 injections total.  Zero improvement.  I had 45ish curve up.    
Peyronies for 2+ years.  Have ED for 8 months
Tried Xiaflex, 3 cycles, zero improvement
Had incision & grafting surgery, Feb 2019.  Fixed curve (I think) but resulted in substantial length & girth loss. 
Facing implant as remaining option